QUEEN EVA's MODIFIED CHARIOT

We'd like to introduce ourselves.

We are Thomas & Marian and we have two children - Eva (6 years old) and Natalia (2.5 years old).  We live in Rosebery, Sydney.  We are a little family seeking support in purchasing a wheelchair-accessible vehicle (Queen Eva's chariot) for our Eva moo, so that we can get out and about within our community and participate with Eva in activities which are currently unavaliable to us.

Six years ago our first child Eva was born .  Marian had a healthy pregnancy. We were advised at 28 weeks that she had talipes.  This concerned us greatly.  Little did we know that this would be the least of our worries.  Eva made quite an entrance.  To this day she has a way of bringing everyone together and lighting up the room. This is what she did when she was born.

Eva was born full term but during the labour process there were complications.  We didn't understand what was going on.  There was so many people in the room - the whole team from Neo-natal and ICU were present.
Quite an entrance - Quite an audience!  Eva was delivered by forceps and wasn't breathing.  The doctors tried resuscitating her.  Time seemed to have gone on forever.  After 20 minutes, Eva decided to breathe but was experiencing seizures.

She was subsequently diagnosed with severe quadripligic cerebral palsy.  This means that all 4 limbs are effected and she would be unable to independently sit, crawl or walk.  This was more than the case of talipes that we'd prepared ourselves for.  And this certainly was not the end.  Our Queen Eva wanted more - she demanded a tracheostomy and gastrostomy as well.

A tracheostomy is an incision in the windpipe made to relieve an obstrution to breathing.  This is the only way she can breathe however it has rendered her incapable of making sounds and thereby talking.  She is non-verbal and communicates only using facial expressions. Her eyes do all her talking for her.

A gastrostomy is the creation of an artifical external opening into the stomach for nutritional support.  So our Queen Eva is fed through a tube into her stomach.  She doesn't need to waste any time or energy feeding herself or chewing her food - it's all done for her.

Despite Eva's condition, she has definitly taught us to really appreicate the simple things in life  - to live in the moment.  We started to see everything through Eva's eyes.  She can't get out of bed - so we're happy each day that we can get up and out of bed.  We did the Sydney to Wollongong ride -  if Eva cant ride a bike, we'll do it for her.  Eva helped us to change our whole outlook on life.  Sure, we felt depressed and started  playing the blame game in the early days.  This really got us down - until the moment after one of the seizures, the doctors told us that it's better to let her go.  We had never even thought of that before so then we then realised we had a choice to make - to accept life as it's been dealt to us and count it as a blessing.  We chose to be positive and that has made all the difference.  We enjoy life and we love getting out and about as a family and not limiting Eva as to where she can go or where we can take her.

Our community is very important to us and being involved in local soccer and football games has afforded us an outlet for our frustrations (when we each are down) whilst getting healthy at the same time! There's so much to live for, experience and share with Eva.  To do this we need a wheelchair accessible chariot for our Queen and these don't come cheap.  We need to raise $80,000 to purchase a van and have it modified.

Thomas will also be participating in a few marathons to help fundraise towards Eva's modified chariot. We will keep you updated.

If you can help us in any way please donate  - we'd love to hear from you.

Thomas, Marian, Eva and Natalia.